Case 17 A change in plan

Sheila Drake is an 86-year-old lady with cognitive impairment. She is looked after at home by privately-funded 24-hour carers. Mrs Drake had a total anterior circulation stroke a year ago. She is fully dependent and unable to communicate. She is fed a pureed diet by her carers although on occasion, she does not cooperate and appears to be refusing oral intake. She is admitted one evening less responsive than usual. She is seen by Dr Webster, an FY2 doctor in acute medicine.

Dr Webster takes a history from Mrs Drake’s carer and examines her. Mrs Drake appears underweight and dehydrated. There is no evidence of sepsis. Dr Webster sends routine bloods and prescribes intravenous fluids. He feels that Mrs Drake ought not to be resuscitated in the event of cardiopulmonary arrest on account of her frailty and comorbidities. The hospital routinely uses a screening tool to identify patients who may require end of life care. Dr Webster considers it likely that Mrs Drake is entering the terminal phase of her life and suggests that the nursing staff ought to have preliminary discussions with Mrs Drake’s family when they attend to prepare them for this likely outcome. Following discussion with the duty registrar, a ‘Do Not Attempt Resuscitation’ (DNAR) form is completed.

Are you happy with the decisions made by Dr Webster?

An hour or so later, Mrs Margaret De Souza, Mrs Drake’s daughter, arrives at the hospital having been informed by the care agency of the admission. She asks to see Dr Webster and be updated on her mother’s current situation and the forward care plan.

Should Dr Webster talk candidly to Mrs De Souza?

Dr Webster explains his findings to Mrs De Souza and updates her on the results of baseline blood tests (which were unremarkable aside from a mild degree of acute renal failure and a reduced serum albumin). He explains the plan to provide intravenous rehydration overnight and outlines the decision that has been made in relation to resuscitation.

Mrs De Souza, who was initially friendly and positive, reacts badly when the issue of resuscitation is raised. Her body language and demeanour changes. Mrs De Souza states that her mother must be resuscitated and that she and her husband, a lawyer, have spoken with the hospital about this on previous occasions. As the conversation continues, Mrs De Souza asserts that Mrs Drake should be given antibiotics in case her deterioration is related to occult infection and she feels that nasogastric feeding would also be appropriate.

How should Dr Webster react to these requests?

Dr Webster is somewhat taken aback by Mrs De Souza’s position and the rather aggressive manner in which she has expressed herself. He states that he will discuss her case with his seniors, and pass on the requests that she has made. However, he notes that the treatment plan will be developed in Mrs Drake’s best interests, as perceived by the medical team. Dr Webster explains that Mrs Drake is unable to participate in the decision making process and that nobody is able to direct treatment on behalf of another adult.

At this point, Mrs De Souza tells Dr Webster that she has an enduring power of attorney and as such, she has the necessary authority to direct the treatment that Mrs Drake should have. She produces a letter from a solicitor that appears to confirm that an enduring power of attorney is indeed in place.

What should Dr Webster do at this point?

Dr Webster reconsiders his treatment plan in the light of the letter. He asks the staff nurse to commence broad spectrum antibiotics and to insert a nasogastric feeding tube. He tells Mrs De Souza that Mrs Drake’s resuscitation status will be reviewed with the consultant the following morning but that in the meantime, she will be actively managed if she was to deteriorate.

Expert opinion

This is a challenging situation. In the minds of most people, professional and lay alike, Mrs Drake’s existence will be viewed as pretty miserable. From the history given, she had a debilitating and progressive illness prior to her major stroke a year ago and her life experience seems to have deteriorated markedly following that stroke. Many people would argue that her care should be organized to optimize her comfort and dignity, rather than to prolong her life. If despite rehydration, Mrs Drake’s condition worsens and she has a cardiac arrest, her weak condition means she is highly unlikely to be resuscitated successfully or without suffering further neurological impairment.

Mrs Drake’s daughter, for whatever reason, views things differently and is adamant that all efforts must be made to prolong her mother’s life. Dr Webster’s initial stance was appropriate – decisions should be made that are consistent with Mrs Drake’s best interests. An approach including a baseline assessment, intravenous fluids and good-quality nursing care pending review the next day was both pragmatic and ethically sound. Resuscitation in this context does not seem to be in the best interests of the patient and in any case, it is unlikely that an intensive care team would wish to ventilate Mrs Drake. The line taken by Dr Webster with Mrs De Souza was well reasoned and although it is always preferable to have such discussions once the passage of time has allowed a therapeutic relationship to develop, Mrs De Souza clearly pushed for these discussions to take place at an early stage.

Mrs De Souza told Dr Webster that she had an enduring power of attorney and that this gave her the right to dictate treatment. This is not the case. It is unclear whether Mrs De Souza genuinely believed this to be the situation or whether she wilfully misled Dr Webster in order to achieve the outcome she desired.

Prior to the introduction of the Mental Capacity Act 2005, an Enduring Power of Attorney (EPA) was the mechanism for setting out in advance what a patient wished to happen in the future when they no longer had capacity with regards to his/her property and financial matters.

The Mental Capacity Act 2005 introduced two new types of Lasting Power of Attorney instead of the EPA. These can now cover issues relating to personal welfare (including healthcare) and property and financial affairs. It is no longer possible to establish a new Enduring Power of Attorney although those put in place prior to 2007 remain valid.

It is important to note that even when a Lasting Power of Attorney concerning healthcare is in place, the attorney cannot direct treatment to any greater extent than a competent adult could direct their own management: a specific intervention must always have an appropriate medical indication.

In specific circumstances, where an adult patient has no family or friends who it is appropriate to consult and no attorney (under a registered LPA) to act on their behalf (and have been assessed as lacking capacity to make a necessary decision about serious medical treatment) then the Mental Capacity Act introduces a duty on the NHS to instruct an Independent Mental Capacity Advocate (IMCA). The IMCA will be instructed by the healthcare professional, usually the consultant in charge of care, who will have to make the final decision about whether the proposed serious medical treatment is in the patient’s best interests.

The duties of an IMCA are to support the person who lacks capacity and represent their views and interests to the ‘decision-maker’ (consultant in charge of care); obtain and evaluate information (through interviewing the patient, by examining relevant healthcare records and documents, obtaining the views of professional and paid workers providing care or treatment to the patient, obtain a further medical opinion if required) and prepare a report that the ‘decision-maker’ (consultant in charge of care) must consider.

The IMCA is not a decision-maker for the person who lacks capacity. They are there to support and represent that person and to ensure that decision-making for the person who lacks capacity is done appropriately in accordance with the MCA.

The only exception to involving an IMCA is where an urgent decision is needed for example to provide emergency life saving treatment. When there is frank disagreement between a patient’s next of kin and the medical team then the MCA Code of Practice for healthcare professionals (5.63–5.64) states that any dispute about the best interests of a person who lacks capacity should be resolved, wherever possible, in a quick and cost effective manner. Alternative solutions to disputes, such as informal resolution, formal complaints resolution and mediation should be considered, where appropriate, before an application to the Court of Protection.

Legal comment

No patient, or relative of a patient, can require a particular type of treatment from the healthcare team. All treatment must be clinically indicated and to be in the best interests of the patient. Ideally, the deterioration in a patient’s condition necessitating consideration of a DNAR order and the rationale behind the clinical decision-making process which has been undertaken to reach the view that it would not be in a patient’s best interests to resuscitate should be communicated to the family in advance of the order being implemented.

The Mental Capacity Act 2005 (MCA) introduced LPAs to encourage patients to plan ahead and to discuss with their next of kin and their family what future care options they would wish to pursue should the relevant circumstances arise, and what ‘quality of life issues’ are particularly important and pertinent for them as individuals. The person named as being given LPA can then discuss the patient’s treatment options with the healthcare team as though he/she were the patient.

The welfare LPA is usually written in terms of treatment that a patient has indicated that they do not wish to undergo and does not give the person named as attorney any legal authority for stipulating the treatment that Mrs Drake should have. The person named in the LPA is only authorized to have discussions with the healthcare team about what the patient’s wishes would have been, if the patient had capacity and were able to discuss his/her healthcare treatment options in person. In any event, the person named in the LPA has a legal duty at all times to act in accordance with the best interests of the patient.

All LPAs have to be registered with the Office of the Public Guardian. In addition to the solicitor’s letter, it would also be advisable to ask to see the actual LPA document and to check for the hologram registration seal. The Office of the Public Guardian can also be contacted and can confirm if indeed they do hold an LPA for a particular patient.

When assessing the best interests of a patient with regard to a particular treatment option, a second opinion from another consultant, who has not previously been involved in the patient’s care, can be useful. For example, in assessing whether or not a patient has capacity and in making DNAR decisions.

In the rare cases where the family of a patient (who does not have capacity) disagrees with the treatment plan proposed by the healthcare team, and alternative solutions, for example a multi-disciplinary team best interests meeting, have not resolved the dispute, then the Trust can consider applying to the Court of Protection for a Best Interests Declaration. Namely, requesting that the Court of Protection decide whether the proposed treatment plan is in the patient’s best interests and thereby authorize Trust staff to proceed with the treatment (or withdrawal of treatment) without fear of prosecution. Depending on the urgency for the decision/treatment, the treating consultant will be required to write a statement outlining the patient’s medical history, current condition and likely prognosis along with proposed treatment options. Sometimes the Judge who is allocated the case will take evidence from the consultant over the telephone. The Court of Protection will appoint the Official Solicitor’s Office to act on behalf of the patient and they will obtain expert evidence, if required, as to whether the course of action proposed by the Trust is in the patient’s best interests. If the case is brought by the Trust, then the Trust will also be responsible for the Official Solicitor’s costs. This is an intense and expensive process.

Where the patient has appointed an attorney, who can be a family member or a friend or a professional such as a lawyer under a registered personal welfare LPA, then the Court of Protection will also ask to hear evidence from the attorney to obtain background information about the patient’s wishes and any other useful information that may assist the Court of Protection’s decision about the patient’s best interests.

Where a best interests declaration is pending from the Court of Protection, the doctors in charge of the patient’s care should always continue to treat in the patient’s best interests, keeping the patient as stable as possible.

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